Caregiver Individual Tools - Miami University

Caregiver Individual Tools — of 29

Caregiver Individual ToolsThese tools belong to:______________________________________________

Date:______________________________________________

Our Family, Our Way: A Communication and Care Coordination Guide for Caregiving Families

Created by Scripps Gerontology Center, Miami University with support from The Retirement Research Foundation and The Ohio Long-Term Care Research Project

Heston, J. L. & McGrew, K. B. (2019). This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Based on a work at www.MiamiOH.edu/ScrippsAging/OFOW. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-nd/4.0/

For information about Our Family, Our Way, contact:

Jennifer Heston-Mullins, PhD, LISW Scripps Gerontology Center

Miami University 396 Upham Hall

Oxford, Ohio 45056

Scripps Gerontology Center

June 2020



Contents

Before You Begin...What Matters Most? ......................................................................................................................................................... 5

WHAT’S NEEDED? ................................................................................................................................................................................. 6

Underlying Health Considerations ................................................................................................................................................................... 7

Environmental Considerations ........................................................................................................................................................................ 8

What Care and Support is Required and Who is Helping Now? .................................................................................................................... 11

When are YOU Providing Care and Support? ................................................................................................................................................ 15

How Does the Current Care and Support Arrangement Affect You? ............................................................................................................. 16

What’s Needed – My Notes for Our Family Meeting .................................................................................................................................... 19

WHAT’S WANTED? .............................................................................................................................................................................. 20

What is your ultimate goal for the care and support arrangement? ............................................................................................................. 21

What changes do you want in the care and support arrangement? ............................................................................................................. 21

What’s Wanted – My Notes for Our Family Meeting .................................................................................................................................... 22

WHAT’S POSSIBLE? ............................................................................................................................................................................. 23

What’s Possible? – Part One .......................................................................................................................................................................... 24

What’s Possible? – Part Two .......................................................................................................................................................................... 27

What’s Possible – My Notes for Our Family Meeting .................................................................................................................................... 28

Next Steps: ......................................................................................................................................................................................... 29


Reminder:Everything you write in these Individual Tools will be shared with

your family members during your family meeting.


Before You Begin...What Matters Most?

The care and support arrangement affects everybody’s life—persons with care needs and caregivers alike. Before you begin, take a moment to reflect on what matters most to you, in your own life, on a daily basis. Keep this in mind while you and your family discuss your unique care and support arrangement.

WHAT MATTERS MOST to you about how you spend your time and with whom? What’s important to you about the flow of your day? What are you most eager to preserve as life goes on?

For example, some people might say:• I’m an early riser. I do yard work/chores in the morning.• I have an exercise routine that is important to me.• Spending time with my grandchildren makes my day, and it helps their parents.• I need downtime to unwind before bed.• Going to work and earning a paycheck—my job is important to me.• I need some alone time.• I want to get out to see my friends.

Use this space to describe what matters most to you.


WHAT’S NEEDED?This first section is designed to help you think about what is needed in your family’s care and support arrangement. To do this, you’ll complete several tools with questions about:

� Underlying health considerations that limit your Parent/Partner/Person With Care Needs’ (PWCN’s) ability to carry out daily self-care activities

� Environmental considerations related to the home in which your PWCN currently lives

� What help is required by your PWCN and who’s helping now

� When you are providing care and support

� How the current care and support arrangement affects you


Underlying Health Considerations

This tool helps you and your family think and talk about underlying health conditions that limit your PWCN’s ability to carry out daily self-care activities. By keeping these in mind, you’ll be better able to talk about which limitations might be improved and which need to be considered when making decisions about care. Check the column that best describes your PWCN’s current health situation. If you are not sure whether your PWCN experiences limitations in a certain area, check the “I’m not sure” column.

How do limitations in the following areas affect your PWCN’s ability to carry out daily living and self-care activities?

Health ConsiderationI’m not

sureNo

limitationSome

limitationMajor

limitationHearingVisionTaste/smellDental healthBladder or bowel controlHand dexterityPhysical mobilityBalanceStrengthSleepEnergyPainDecision-making/judgment DepressionAnxietySubstance use disorder/addictionOther physical or mental health considerations. Please describe.


Environmental Considerations

This tool helps you and your family think about your PWCN’s current living environment. If you generally agree with the category, check the “Yes” column. If you generally disagree with the category, check the “No” column. If you’re not sure, check the “I’m not sure” column. If the category is not applicable (for example, there are no stairs), check the “N/A” column.

The neighborhood... N/AI’m not

sure Yes No NotesIs safe.Is convenient.Is near family and/or friends.Other. Please describe.

The home... N/AI’m not

sure Yes No NotesHas rooms and hallways clear of clutter.Has non-skid rugs.Has safe stairways (clutter free, handrails, clearly marked, well lit).Has easy to use furniture.Has adequate indoor lighting.Has adequate outdoor lighting.Has adequate heating.Has adequate cooling.Has a phone within reach or easy to get to.Has an emergency response system (e.g., Lifeline).Has smoke alarms installed, tested.Has carbon monoxide detector installed, tested.Has window locks or bars.Has working doorbell or knocker that can be heard.


The home... N/AI’m not

sure Yes No NotesHas a peephole or window to see out the front door.Has exterior in good repair.Has accessible interior doorways.Has accessible exterior doorways.Has lawn care/snow and ice removal when necessary.Has an accessible mailbox.Has a visible address marker.Is free of pests (roaches, bed bugs, etc.).Other. Please describe.

In the kitchen... N/AI’m not

sure Yes No NotesFrequently used items are accessible on the shelves.The stove is easy to use and safe.The microwave is at a good height/is accessible.The floor is skid free.Other. Please describe.

In the bathroom... N/AI’m not

sure Yes No NotesThe tub/shower is accessible.The tub/shower floor is slip-proof.There are grab bars for getting in and out of the tub/shower.There is a hand-held shower or shower seat.There are grab bars for getting up from the toilet.


In the bathroom... N/AI’m not

sure Yes No NotesOther. Please describe.

If there are pets... N/AI’m not

sure Yes No NotesThey are safe underfoot.They are easy to feed.They are easy to let out/clean up after.They are friendly with people.They are friendly with other animals.They are in good health.There is a plan to get them to/from the veterinarian.There is a plan if the PWCN cannot care for them (e.g., hospital stay).Other. Please describe.

Are there any other environmental concerns unique to life in the home (oxygen, shared spaces, etc.)? Name them here.


What Care and Support is Required and Who is Helping Now?

This tool helps you and your family members think about what care and support is required and who is helping now.

For the “What personal help is required?” section, identify the amount of personal help required by your PWCN by checking a box for each care or support activity.  By “personal help,” we mean help your PWCN requires from another person.

For the “Who is helping now?” section, identify who is assisting your PWCN with the activity. Don’t forget to include yourself, if applicable!

For the “What devices are used and needed?” section, indicate what kinds of equipment or devices (like a wheelchair, walker, a lift, adjustable bed, or special tools) are used and what kinds of equipment or devices could be helpful.

If the activity is not applicable to your PWCN, check “N/A.”  (For example, if no medical or nursing tasks are needed, or if there are no pets, these are not applicable.)

If you are not sure about what help is required, who is helping, or what devices are used or could be helpful, check the “I’m not sure” box in each of those sections.

Care or support activity What PERSONAL help is required? Who is helping now? What DEVICES are used and needed?

How much personal help does your PWCN require with the following activities: N/A

I’m not sure

Requires no help

Requires some help

Requires much help

I’m not sure

Who provides the help?

No one is helping,

but help is needed

I’m not sure

What devices are USED?

What devices could be helpful?

Bathing orshoweringDressing

Grooming (e.g., hair care, shaving, teeth-brushing, nail care)Getting to the toilet, using a bedpan, or other toileting needs




I’m not sure

Requires no help

Requires some help

Requires much help

I’m not sure


No one is helping,

but help is needed

I’m not sure



Eating or drinking

Getting in/out of bed/chairGetting around the houseManaging medications

Medical or nursing tasks (e.g., changing bandages, injections, colostomy/catheter)Preparing meals

Making telephone calls

Transportation

Communicating and coordinating with health and service providersGoing to medical appointmentsDoing essential shopping (e.g., grocery, pharmacy)Writing checks and paying bills




I’m not sure

Requires no help

Requires some help

Requires much help

I’m not sure


No one is helping,

but help is needed

I’m not sure



Managing insurance or legal matters (e.g., estate planning, POA, etc.)Doing laundry

Doing light house or yard workTaking out trash/bringing in trash cansDoing heavy house or yard workDoing home modificationsCaring for pets

Social contact (e.g., visits, telephone calls)Emotional support (e.g., reassurance, encouragement)Other. Please describe.




I’m not sure

Requires no help

Requires some help

Requires much help

I’m not sure


No one is helping,

but help is needed

I’m not sure



Other. Please describe.


When are YOU Providing Care and Support?

In every family, caregivers provide different types and amounts of care and support—and at different times. This tool will help you and your family members think and talk about when you are currently providing care and support to your PWCN.

If you are currently providing care or support occasionally, in the space below, describe the care or support you provide and when you provide it.  Examples include phone check-ins, breaks for the primary caregiver, paperwork assistance, or communication with health and service providers, etc.

If you currently provide care or support on a daily or weekly basis, check the times you generally provide help.

Early Morning Late Morning  Early Afternoon Late Afternoon Early Evening Late Evening  Overnight MONDAYTUESDAYWEDNESDAYTHURSDAYFRIDAYSATURDAYSUNDAY


How Does the Current Care and Support Arrangement Affect You?

This tool helps you and your family think and talk about the impact the care and support arrangement has on each person so you’ll be able to keep this in mind as you make decisions about care and support.

For each area, choose the number from 1 to 5 that best reflects how much you think the care and support arrangement affects you overall in that area, then use the box below each rating to give examples of what influenced your rating.

Overall physical strain

1 2 3 4 5

No physical strain Extreme physical strain

1 2 3 4 5

No emotional stress Extreme emotional stress

1 2 3 4 5

No social loss Extreme social loss

1 2 3 4 5

No �nancial hardship to me Extreme �nancial hardship to me

What are those physical strains?

Overall emotional stress

1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


What are those emotional stresses?


Overall loss of social time (for work, school, volunteering, recreation, family, and friendships)

1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


What are those social losses?

Overall financial hardship

1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


1 2 3 4 5


What are those financial hardships?

Adapted from: National Alliance for Caregiving and AARP, Family Caregiving in the U.S.: Findings from a National Survey, 1997. http://www.caregiving.org/pdf/research/finalreport97.pdf (page 39)


BenefitsWe know that family care can create some stresses and strains, but families also report experiencing benefits from the care and support arrangement.  These include physical, emotional, social, and financial benefits.  Use the space below to identify any benefits of the care and support arrangement you may be experiencing. 

StrengthsEach person—the PWCN and the caregivers alike—brings a different set of strengths to the care and support arrangement. What are the strengths you bring or have the potential to bring to your family’s care and support arrangement? (Examples include:  patience, sense of humor, knowledge about illness/disability, particular caregiving skills, financial resources, etc.) Name your own strengths here.


What’s Needed – My Notes for Our Family Meeting

Use this space to write additional notes about what’s needed in your family’s care and support arrangement.


WHAT’S WANTED?Now that you have thought about what’s needed and what’s happening, it’s important to think about what is wanted when it comes to the care and support arrangement. You can think about what’s wanted in two ways:

� What is your ultimate goal for the care and support arrangement?

� What changes do you want in the care and support arrangement?

When you complete these tools, it’s important to be as specific as you can. The more specific you are, the easier it will be for others to understand what you want.


What is your ultimate goal for the care and support arrangement?

Before you can start to think about what’s possible in your family’s care and support arrangement, it helps to have a clear vision of what you want to happen as a result of your arrangement. Often, family members have different ideas about what they want to happen, so before you meet with your family, take some time to think about your goal for the care and support arrangement and write it here:

My ultimate goal for our family’s care and support arrangement is:

During your family meeting, you and your family members will work together to create a shared goal statement(s) for your family.

What changes do you want in the care and support arrangement?

Now that you have determined what you want, think about what needs to change in the care and support arrangement in order for that to happen.

Below, list 3 changes that could be made (by you, your PWCN, or the other caregivers) to help achieve your ultimate goal. Be realistic. It may help you to think of the 3 simplest or easiest changes that could be made to bring you closer to your goal.

1. _____________________________________________________________________________________________________________

2. _____________________________________________________________________________________________________________

3. _____________________________________________________________________________________________________________


What’s Wanted – My Notes for Our Family Meeting

Use this space to write additional notes about what’s wanted in your family’s care and support arrangement.


WHAT’S POSSIBLE?This section is designed to help you think about what is possible in your family’s care and support arrangement. To do this, you’ll think about what’s possible in two ways:

� Care and support you could provide as part of the care and support arrangement

� Extended family, friends, or community services who may be able to provide care and support


What’s Possible? – Part One

This tool helps you and your family members think about care and support you could provide as part of the care and support arrangement. For each care or support activity, check whether you are “willing and able to do” the activity, “able and willing to share,” “able only with other help on hand,” “unable or unavailable to do,” “prefer not to do,” “could learn to do,” or “could contribute money/resources toward.” If the care or support activity is not needed, check “not required now.” You may check more than one box in each row.

Even if the care or support is not required now, this is a good opportunity for you to think about what might be possible should the need arise in the future.

Note: There are many reasons caregivers may be unable or unavailable to help with a care activity and this is the time to clearly name your limitations. Here are some examples:

• You lack the physical strength or ability.• The care activity is too emotionally difficult.• You don’t have the needed skills or knowledge.• You don’t have the needed equipment.• You don’t have the time.• You live too far away. • There are personality differences or conflicts.

Care or support activity

Notrequired

now

Able and willing to do

Able and willing

to share

Able only withother help

on hand

Unable or unavailable

to do

Prefer not

to do

Could learnto do

Could contribute money/resources

toward

Bathing or showering

Dressing

Grooming (e.g., hair care, shaving, teeth-brushing, nail care)Getting to the toilet, using a bedpan, or other toileting needs



Notrequired

now


Able and willing

to share


on hand


to do

Prefer not

to do

Could learnto do


toward

Eating or drinking

Getting in/out of bed/chair

Getting around the house

Managing medications

Medical or nursing tasks (e.g., changing bandages, injections, colostomy/catheter)Preparing meals

Making telephone calls

Transportation

Communicating and coordinating with health and service providersGoing to medical appointments

Doing essential shopping (e.g., grocery, pharmacy)Writing checks and paying bills

Managing legal matters (e.g., estate planning, POA, etc.)Doing laundry



Notrequired

now


Able and willing

to share


on hand


to do

Prefer not

to do

Could learnto do


toward

Doing light house or yard work

Taking out trash/bringing in trash cans

Doing heavy house or yard work

Home repairs or modifications

Caring for pets

Social contact (e.g., visits, telephone calls)Emotional support (e.g., reassurance, encouragement)Other. Please describe.

Other. Please describe.


What’s Possible? – Part Two

This tool helps you and your family think about extended family (that is, family other than the spouse/partner and adult children) or friends or community services who may be able to provide some of your PWCN’s care and support. Identify the individual or the community service and the type of care and support they might provide. Your local Area Agency on Aging or other resources in the Helpful Caregiving Resources booklet (located on the OFOW website) can assist you in identifying community services available in your area.

Who else is available to provide care and support?Extended family or friends What might they do? Community Services What might they do?


What’s Possible – My Notes for Our Family Meeting

Use this space to write additional notes about what’s possible in your family’s care and support arrangement.


You’ve completed your Individual Tools!

Next Steps:

� Review pages 10 - 12 in the Family Meeting Guide to help you get ready for your family meeting.

� If your family is going to meet in person, bring your completed Individual Tools with you to your family meeting. If you family is holding a virtual meeting, make arrangements to share your completed Individual Tools with each other electronically before your meeting.

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